Tuesday, January 31, 2012

Special Needs Adoption From China

When Megan and Keith Nakamoto started the China adoption process in 2005 they knew they could be in for a wait. Three and half years later, the Lincoln Park couple decided to switch from the traditional Chinese adoption program and adopt a special needs child.

"Who knows? We probably still would have been waiting. It's almost like you see this goal and you want it so badly, but it gets harder and harder and you think it's not going to happen," said Megan Nakamoto, 48, who welcomed her daughter, Tessa, in 2010. "We switched to the special needs program, and then you have a new hope. Then, it's scary all over again because you're adopting a child with special needs."

Experts say more families are choosing to adopt special needs children through China's Waiting Child program, which releases children with minor and significant health issues in as little as a year. Adopting a healthy child from China took one year to 18 months in 2006. Now it can now take more than six years, straining both prospective parents' patience and pockets.

"I think now the biggest change we're looking at is that there are families who are willing to adopt special needs children. That really is the wave of international adoption," said Bob McNeill, an adoption worker at Sunny Ridge Family Center in Bolingbrook.

In China, international adoption for special needs kids is about the only option for permanent family. Disabilities are considered curses on the family, and is the primary reason for abandonment of special needs kids. They are, because of that stigma, highly unlikely to be adopted domestically in China. Sometimes, adoption to a Western country is the only way for the child to get needed medical treatment since China puts only limited funds for such treatment in the hands of orphanages. So it's a good thing, isn't it, when internationallly adopting parents choose the special-needs program over the non-special-needs program, right?

One of my perpetual concerns about special needs adoption from China is that folks might be more interested in getting a child quickly than in actually parenting a child with special needs. The desire to "jump the line" by switching to special needs may not be adequately thought out. Prospective parents might be overly optimistic about what special needs entail. I'll hear prospective parents say things like, "It's just albinism;" or "It's easily corrected with surgery." Really? Did you know that albinism comes with an increased risk of congenital heart problems? Did you know that cleft palate repair might involve a series of surgeries, not just one? Did you know children with cleft palate often have hearing problems? Have you thought of how you will facilitate attachment when you immediately subject your newly-adopted child to painful surgery with a recovery period that will have you saying no to them frequently, preventing them from touching their mouths, denying them certain foods?

Of course, lots of parents handle special needs like champs. But are the "line jumpers" really prepared? Does the family have the time, money, health insurance, ability to take off work, emotional wherewithal to handle special needs? Consider this post about remarks Amy Eldridge of Love Without Boundaries made about unprepared special needs adopters:

Amy also said that adoptive parents need to be prepared before adopting. When
they have seen disruptions of adoption in China -- where adoptive parents decide
not to go through with a special needs adoption even before returning home --
it's usually because they have not been adequately prepared. She received a
call from a family who had switched from the NSN program to the special needs
program to adopt a cleft child who had been an LWB child. LWB had repaired her
lip, though her palatte repair needed to be done when she was older. Amy knew
the child was perfectly healthy, chubby, interactive -- everything you'd want
from a institutionalized child. The dad said to her, "Do you know that when she
drinks her bottle, milk comes out of her nose?" Duh, yes, Amy knew that and the
family would have known that if they had read ANYTHING about cleft-affected
children.

I'm also bothered that those with potentially the least resources -- single parents -- only have the option of special needs adoption from China. Yes, I'm a single mom and I'm handling two kids. But given the fact that I'm the only wage-earner in the house, making it difficult to take off for long stretches of time to care for a special needs child; that I have lousy health insurance and don't have t he option of putting the kids on my spouse's plan; that my extended family in the area is only my mom who, as fantastic as she is, is still only one person; that I'm really bad about asking for help; I wouldn't be a very good parent for a special needs child. That is often -- but not always, I know -- the case with single parents

And if adopting one special needs child would be difficult, how difficult would it be to adopt two at a time? China used to restrict adoption to one child at a time, except in cases of twins/triplets/etc. Now, for some hard-to-place special needs kids -- called Special Focus kids -- China allows adoptive parents to adopt a second child at the same time. That second child can be healthy, special needs or special focus. Here we go again -- in the case of special needs children who potentially need the most support and attention, you're allowed to split your limited resources (EVERYONE has limits on their resources) between two newly-adopted kids, with all that that kind of transition entails. And I've heard prospective adoptive parents talk about this two-fer program as if a healthy child is the "reward" for taking a special needs child, as if the special needs child is the price you have to pay for jumping the line to get a healthy child fast.

18 comments:

Anonymous
said...

I believe a concurrent adoption only means that someone can still stay in the NSN line while jumping the line to adopt a SN child. But, adopting that NSN child is still years away, leaving time to tend to the SN or SF child. BUT I completely agree with you about jumping the line. Some PAPs who have never been parents before have fantasies about what it will be like to be a first time parent, and it's hard enough BEING That first time parent. Add to the mix SN or SF and being single...honestly, I'm surprised the program has not failed yet. Perhaps that means there are more prepared PAPs for SN and SF than I had once thought.

Agreed on all fronts. I'm also concerned about the rise in two-at-once adoptions (families traveling once and adopting two kids, usually from two different Provinces and possibly with two different SNs).

But, albinism does not come with an increased risk of congenital heart problems.

Yes, families that switch must be fully prepared - not all are and not all agencies adequately facilitate preparation. At the same time, many families that switch from NSN to SN are prepared and had years to do research and learn about various SNs and were able make informed decisions. All of my China adoption peers who did switch and all in our travel group were very well prepared and educated, including myself and my husband. One needs to be careful to not assume that those who fail to prepare are in the majority. For every story you hear of clueless SN AP's, there are many more knowledgeable ones.

Also, while it may be rare, it does happen that Chinese families in China adopt SN children. Our child had been adopted by a Chinese couple prior to being abandoned for a second time (due to circumstances unrelated to our child).

"And I've heard prospective adoptive parents talk about this two-fer program as if a healthy child is the "reward" for taking a special needs child, as if the special needs child is the price you have to pay for jumping the line to get a healthy child fast."

I've been very active on many adoption forums and yahoo groups and have read adoption blogs for years. I have never heard this. Ever.

Having said that, your concerns echo my own as I see so many families adopting over and over and over again -- as many as 3 children in one year with varying degrees of special needs or older children or adding a child a year for three, four or five years straight. This is very troubling to me but if the CCCWA is aware of it and okay with it, and agencies and social workers are okay with it, what really can I, or anyone, do?

I've adopted two children born with cleft lip and palate. Before I adopted my son I did lots of research and thought I was prepared but I focused on his surgeries when it is just as important to concentrate on speech. We didn't know what we didn't know if that makes sense.

But all kids with cleft palate aren't the same. The difficulties are different - some kiddos drool excessively, some have receptive language problems others have very little trouble at all. My little guy had to have five surgeries before the age four. I've never had biological children so I don't know any different.

Still we managed, tried to stay flexible, have good insurance and local resources. I'm the luckiest person in the world to get to be my kids mom.

ALL PAP's should be honest about their limitations - whether financial, emotional or about general available resources in their community.

We find ourselves spending most of our time meeting their medical and developmental needs first - and that doesn't leave as much time for the other things our children need - like Chinese school, for example. We have a number of appointments each week and my kids are exhausted by the end of the week. We'll fit it in as soon as we can.

Now, for some hard-to-place special needs kids -- called Special Focus kids -- China allows adoptive parents to adopt a second child at the same time. That second child can be healthy, special needs or special focus.

And I've heard prospective adoptive parents talk about this two-fer program as if a healthy child is the "reward" for taking a special needs child, as if the special needs child is the price you have to pay for jumping the line to get a healthy child fast.

I thought that, in order to adopt two at once, both children had to be on the waiting child list for more than 2 months? How are APs being matched with healthy children outside of the NSN program? Or are the healthy children simply older, which a different sort of SN?

I've adopted two children with special needs and all I can say is that you can do all the research necessary and it may still not totally prepare you for what it is really like once that child is home. Even thinking I knew what to expect with the second child after having experience with the first, I came to discover that every situation is different. Just as giving birth to a child with special needs, no biological parent could be totally prepared for what it entails on a daily basis either until there. Why should we judge adoptive parents any differently.

In 2010, over 3000 children were adopted from China to the US and some 60% of them were special needs children. In 2011 it was closer to 70%. It is wonderful that children who wouldn't otherwise get the medical attention and love that they deserve are getting families willing to provide it to them. I've met many of them.

I think it is a rare few who don't put the thought into the challenges that adopting a special needs child requires even if many are still choosing this option as a way to create a family.

I think MOST PAPs do put in the research time. But as others have already stated, each child has an individual case of needs. It's that way with NSN children, who have been institutionalized. And it takes a lot of work to bring them up to par with their peers, even in the BEST of situations in the orphanages. And even with NSN children, I think APs are overwhelmed when they find out the truth about sleep deprivation, bonding, large and small motor skills needing to be fine tuned...all to varying degrees in NSN adoptions..but all of them are there. I can only imagine how unprepared the prepared PAP would be for a SN or especially a SF child. No amount of preparation can prepare someone to adopt a SN or FS child because their individual needs are sooo unique to them, and their needs are so vast. And I agree, adopting more than one child (SN or SF) in less than 3 years time, is, IMO, doing a disservice to the child adopted first. ESPECIALLY if it is a single AP. I, frankly, am a little shocked that China allows a single parent to adopt a SN or SF child while waiting for a NSN child. It took all we had for DH and I to focus on our NSN child. Now she is very well adjusted...but it took a bit of time, and both of us to continue to put time and effort into her emotional and mental growth. And still does, 6 years later.

I was a line jumper. We were in the NSN line for three years and switched to the SN program after a lot of soul searching, research and discussion. Our agency has a special agreement with one province which allowed us to take more time to decide to accept a SN child than the "lottery" system that I think has flaws. In the end it is very personal but to be honest our SN child had better care in China than our NSN daughter adopted in 06, and so his attachment was easier. As for his medical issues he had surgery in China before we met him and his special need was corrected. Last year the Rumor Queen blog asked parents dealing with special need children on a day by day basis to write in about the good bad and ugly truth about parenting a SN child. I think this is a must read for anyone adopting a SN child. We have friends who are doctors who are switching to the SN program and although they thought they knew a lot about the medical conditions reading about the day to day care by parents was very eye opening. In the end I hope parents switching do their research but like anything this is a very personal decision.

I lurk on several China SN forums/groups (our son is a waiting child in Korea) and I have observed first-hand posts that describe/reflect many of the concerns your write about in this post. In particular threads that ask which SNs are most likely to be "totally corrected" in country prior to travel, or which SNs cost the least to manage/have the least impact on the family's daily life...These posts are often from families just starting the process of considering the China SN program and they do indicate that these PAPs are doing research ahead of time, BUT they often read as if the PAP is looking for a "discount" model child. A child with SN so minor that the family could travel and take custody within a year of a child with a fully "correctable" need. Are these families really seeking to provide a home for a child in need of extra medical support or are they looking for the fastest, cheapest way to get to the front of the line? In some cases the lines seem blurred.

I'm a little irritated with this post. Most likely because my family and I fit into several of the scenarios you described and I take personal offense but more likely ibecause of the expectations placed upon adoptive parents. I have had the pleasure of being the mom to a bio child and adopted children for a total of five kids. You are asking for parents to be 100 percent prepared for every possible outcome and that is just not realistic.

As a first time mom, I had no idea what was coming out. I could have given birth to a child with downs, CP, Cl/Cp, etc. I did not research ALL of the possible outcomes, maybe I should have. And, although I knew about colic, there is NO way I was prepared for 6 months of screaming from 6-9pm EVERY night. Sometimes parenting requires a lot of OJT (on the job training).

We were never in the NSN line, but we did adopt our first child from China when he was seven and brought the littles home 17 months later at ages 5 and 4. I have never referred to my children as "two fer" and find the term offensive and demeaning to my children. I did not "buy" them at a discount store and your assumption that the second child is seen as a reward would be far from correct. The rules for adopting two children at one time are very specific and several agencies still do not allow it. We were the first family with our agency and I am sure it has alot to do with our background. We then brought our daughter home 4 months later from another country.

Now, would I recommend this for everyone? Certainly not. Would I do everything again? It depends on when you ask me. Right now, yes. None of our children has had an incredibly difficult time transitioning into our family and their needs are certainly manageable, but it has been an experience and an adjustment to go from one to five children in less than three years. Do I think PAPs need to be fully informed on the need of their child? Sure, but I also know sometimes needs are"discovered" after the child leaves China and receives a thorough veal here. And I accept the limits of humans who cannot be expected to know everything all the time about everything. As APs we get scared of both the present and future both for ourselves and our children. We need each other for support and information. And, as far as single parents, shame on you for implying they can't do it alone. You are a single Mom. Stop assuming YOU can do it but others can't. Well, I guess I will get off my soap box now.

We have adopted from China twice. The first was NSN and the second time was SN—intended SN from the beginning. For the record, I HATE these descriptors! We researched various medical conditions and decided which ones we felt our family had the resources to best provide care.

We also researched other factors that could also be involved with those medical considerations etc. Nothing is ever 100% known. We feel that our youngest daughter has a mild medical consideration—other people ‘classify’ her in the moderate category. It really comes down to the families and their perceptions, abilities, resources, etc.

You do see PAP asking questions on list serves and blogs about which medical conditions are the easiest etc. There really isn’t an answer to that because some families are more equipped to address certain medical considerations than others, whether due to medical insurance, personalities, family dynamics, location to therapies for speech, occupational, etc. I don’t mean that in a good or bad way—just simply that is how life is with most things.

I had heard glimmers that there has been an increase in disruptions since the increase in SN adoptions. It would be interesting to see if any studies have been or are in the process regarding this particular issue.

I do believe that disruptions/dissolutions are more likely when a child has a medical condition, the child is older, adopting out of birth order, artificial twinning, adopting more than one non-related child within a short period of time. This is why some agencies will not allow parents to adopt out of birth order or the twinning.

This isn’t to say that families who do adopt this way cannot work—I know or know of several that appear to be thriving, just statistically speaking. Others are likely more equipped to talk on these points than I.

Thank you for your attention to this issue. Prior to moving forward with our "SN" placement (I detest this term as well), we did our best to research our son-to-be's condition and assess whether we could effectively parent him and our existing child. Of course, we undertook most of this research/soul-searching before we pursued an adoption at all -- and I am confident that the vast majority of PAPs research and consider their respective issues to the best of their abilities as well. Inevitably however, naivete and sheer ignorance are a part of every family expansion regardless of its method. My hope is that pre- and post-placement information and support systems evolve to help the possible increase in families needing specialized information and services.

To that end, I ask that you please identify your evidence/sources supporting the assertion "that albinism comes with an increased risk of congenital heart problems". In the alternative, please publicly disclaim this statement. We agree that PAPs should fully research a child's condition, and thus we should provide complete and accurate information.

Malinda, with due respect for your thoughtful and thought-provoking blog, that is a sweeping statement. In China's huge population, as in probably all countries the vast majority of children, NSN or SN, are raised by their families of origin, are not abandoned and never become available for adoption. Like most parents everywhere, most parents in China and those who are ethnic Chinese residents or citizens elsewhere will love their children and do the best they know how to do for them. Certainly there are those who will have difficulty accepting a child with disabilities and it is true that in general, social awareness of disabilities and the resources to accommodate them are not as widespread as in some IA receiving countries, but deep prejudices and ignorance remain among some people and within many systems all over the world. Those are not specific to China.

In the US, it has only been within the last 20-35 years that various federal laws have given children and adults legally protected equal access to education, employment, housing, public accommodations, transportation, etc.-- well within the conscious memory of many adults with disabilities, and as one knows, laws take a long time to be realized to their full potential, including to this day.

China is perhaps one or two generations removed from the US in that respect, but as the Love Without Boundaries Unity Fund, shows there are families in China who do, or would dearly like to keep and help their children to their fullest potential, and there are many loving orphanage staff and foster families who care for children considered SN. Some do adopt these children or would have liked to had they been allowed.

I know this is not the main point of your post, which I will address later in another comment if I can, but the part I quoted paints the situation with too broad a brush that may unwittingly reinforce some stereotypes.

I had a lot more information about my SN son than my NSN daughter because of his special need. I also know of at least three families who have adopted from the NSN program that ended up with children with fairly severe special needs, one who is legally blind, one with fragile X and another with CP. What classifies as special needs in the China adoption program often would not classify a child as special needs in the US. Heart defects, GI issues are not special needs here they are medical conditions. I believe that if my Son's birth parents had had the resources to give him the medical care he needed they would have kept him. I am sorry that the aid group that sponsored his care did not have access to his birth parents to help them with his medical expenses. The SN program is not for everyone and I don't think we should pass judgement on those who choose or do not choose these options.

I know this is often mentioned, but I still like to remind others when speaking about SN versus NSN adoption programs... adopting through the NSN program does not guarantee that your child will not have SNs, it just means that none have been identified. So says a mom who adopted twice through China's NSN program and is blessed to be parenting one child with SPD, and another child with severe food allergies, hypoglycemia and a history of seizures.

Hermansky Pudlak syndrome (HPS) is a RARE form of albinism with bleeding disorder and heart problems associated with it. However, even though it is RARE form it is likely going to be undiagnosed in an orphanage.

The only person I know who adopted a child with albinism has a child with this form albinism --adopted years ago when originally single parents could adopt NSN children from China. As far as I know though the child while having bleeding issues similar to hemophilia never manifested any heart issues (I didn't meet the child until she was a teenager).

Anyway, it is a rare form of albinism but it is indeed possible that someone who thinks they are adopting a child with 'just' albinism has never heard of this form and could be left reeling from dx of heart problems...especially if they'd been upfront with stating they did not feel able to parent a child with heart problems or bleeding disorders.